International Phelan-McDermid Syndrome Awareness Day is just 22 days away...celebrated on October 22nd, 2019.  We are launching this fundraising campaign for Ashlyn and to show our support of Phelan-McDermid Syndrome Foundation.  

Check out this link to see how you can spread awareness and LIGHT UP GREEN on October 22nd.  https://myemail.constantcontact.com/Phelan-Mcdermid-Syndrome-Awareness-Day-2019.html?soid=1104174981954&aid=aQhWc27H4IM

What is Phelan-McDermid Syndrome?

Phelan-McDermid Syndrome (also known as PMS or 22q13 Syndrome) is a rare genetic syndrome caused by a deletion or mutation on the q arm of chromosome 22. Individuals with PMS are often diagnosed with autism or autism spectrum disorders. Diagnosed individuals also frequently have severe cognitive disabilities, are nonverbal and have a propensity for seizures and sleep disorders, in addition to many other behavioral and medical issues.  Ashlyn was diagnosed with PMS in 2010 when there was only 400 diagnosed individuals.

What's new with Phelan-McDermid Syndrome Foundation?

The PMS Foundation continues to grow and progress. On average, one new family per day joins the foundation. The PMS Foundation has launched several programs to meet these families’ needs, including: 

• A consulting service that enables PMS experts to give treatment advice via video to doctors from around the world who seek help treating their PMS patients.
• A webinar series to help families gain much-needed information on best ways to care for themselves. Caregivers tend to spend all their energy caring for their child and neglect their own health.
• Training for regional PMS representatives to help them better meet the needs of families who have recently learned of a PMS diagnosis and are in shock, feeling vulnerable and unsure of next steps.
• Hosting local and international gatherings where families can come to learn, educate, connect and receive resources.

What does your donation support?

Because of your generous gifts, the PMS Foundation have gained increased recognition within the research community, helping us to take part in clinical trials.  The foundation has paid expenses so that we could travel to Stanford and RUSH Hospital which makes it much easier for us to participate in research.  The Phelan-McDermid Syndrome Foundation prides itself on providing family support and raising awareness while pushing the boundaries of scientific research to create a better quality of life for those living with PMS. With your support, we can generate hope and realize better tomorrows for families affected by Phelan-McDermid Syndrome.

Donations...can be made on this fundraising page or you can send a check made payable to: The Phelan- McDermid Syndrome Foundation, in honor of Ashlyn Schauss to:

Phelan McDermid Syndrome Foundation
PO BOX 1153, 8 Sorrento Drive
Osprey, Florida 34229

Make your donations go twice as far! Contact your company HR Department to see if they might like to match your donation. PMSF Tax ID # is: 04-3673104.

One PMS Child's Journey to Communication - https://www.youtube.com/watch?v=TJPamsAPY7g